Is anybody taking Mycophenolate Mofetil (MMF) ?

[Paul_Howard]

We've been asked about people's experiences taking MMF Cellcept. If you have taken it could you please share? Thank you.

[kenny]

I have been taking cellcept for some 18 months years. My consultant put me on them after my first consultation with him initially started on 500mg two tablets three times a day but I now take 500mg two tablets twice a day without any obvious side effects and to date my bloods have remained within acceptable range.

I hope this helps.

[Hidden]

Hi Paul, ive been on MMF for about 6 years now as had afwful proplems with all the other treatments i tolerate the mmf a lot better have had the odd blip of being neutropenic from time to time but we have reduced my dose from 2.5grams a day to 1gm a day. also has recurrent chest infections but the immunologist thinks its the combo of damaged done buy all the different immunosurpressants rather than just the mmf. now on prophlaytic antibiotics and problem is under control. personally i would have really struggled if mmf hadnt been around.

[Jude65]

I have been on it for 8 months and apart from feeling a little nauseated at the beginning its been fine. I started taking 500mg twice a day and now I take it three times a day. with food. The good thing is that I have started dropping my prednisolone down very slowly - half a mg. a fortnight approximately. This is one of the main reasons I wanted to take it, so that I could reduce the steroids to 5 mg.

I have felt better on the mycophenolate than on any other medication I've taken. My joint and muscle pain has greatly reduced, my balance has improved and I have not had any dizzy spells which I used to get. I have more energy and am less tired.

I hope that this continues and my blood test results remain OK.

[emmalemon]

I have been on MMF - 2g a day, for the past 8 years. I have no side effects now but in the beginning I had some nausea like Jude but now I tolerate it will and have reduced my steroids to 3mg a day. My bloods are always fine so much so that my doctor was stopped the monthly blood tests and now I only get jabbed every 3 months- my veins are happy for the break.

Only drawback is the MMF takes up a lot of space in your luggage ( see my Have Lupus will travel' post)

[IMillar]

Have been on MMF over 5 years since renal transplant. At first I was going to the toilet an awful lot though not diarrhoea but consulant slightly altered dose and spread them out over the day. Now on 250 mg TID with no obvious problems. Bloods are fine.

[cloggy73]

I too have been on MMF for over 5 years - I think it is a super drug. There has been the odd blip with neutropenia and of course the Lupus being the Lupus a relapse here and there but it really has made a difference to before. I also have steroid injections every few months and a long list of other meds which I am sure is not uncommon for us all.

[MandaM]

Have been on MMF as an extra immune supressant to Tacrolimus for my renal transplant for almost 2 years. Firstly i was on 500mg T.D. but after a horrendous virus which attacked my mouth i went down to 250mg T.D. Today i have been told that i may possibly be experiencing active Lupus after 12 years so i'm back up to 500mg T.D from tonight. I DONT WANT ACTIVE LUPUS IT CAN TAKE A HIKE! :0( Fingers crossed for negative results next week and for not getting any nasty virus again. No other symptoms though from MMF.

[Lulabelle]

Like all the other posts - MMF I have been able to tolerate and have been on this medication for the past 12 months. at 500mg twice per day. This is due to be increased to 3 times per day in March as my steroid with be reduced down to 5mg. Hate taking all these med's, (also take Ramipril 2.5mg twice a day), but it is important that i do as the consequences of not taking them scare me more!

[MandaM in reply to Lulabelle]

Lulabelle, i possitively rattle on 16 tablets a day, add all the skin emollients, creams, asthma inhalers etc too! Thank goodness for the pre pay prescription cards! How come Lupus sufferers and transplant patients don't qualify for free prescriptions? Without our meds we wouldn't be here, so yes the consequences of not taking meds ARE scary.

[Lulabelle in reply to MandaM]

Hi Mandam - I don't know what part of the country you are from. i am from Liverpool, Merseyside. Just thought you would like to know that when I was discharged from the hospital in Dec 2010 after a very serious attack of Acute Lupus SLE, my GP signed the Medical Exemption Certificate, (check the DWP Benefits Online to apply for this exemption certificate). This means that I DO NOT pay for any prescriptions for medications that I have to take for my auto immune disorder. I am also entitled to DLA benefits and also work until recently full time. i have had to reduce my hrs to 28hrs per week and will be reducing this shortly, after my recent bout of illness to 21 days per week. Hopefully this will be more manageable for me!

The Medical Exemption covers you for 5yrs. Please look into this as this may save you a small fortune on your medication.

Re creams, emollients, eye drops and creams, dry nose and mouth sprays, special toothpastes and mouthwashes, ( I also have Sjorgren's Syndrome), it's like Boot's the Chemist in my bathroom! Lol!

Let me know how you get on! Take Care x

[Karen34]

Hi there,

I was on 3grams of MMF, and was lucky in that I didn't have any side effects from the medication at all. The only problem was that it didn't work! This was a shame as all the other immuno-suppressants made me very unwell so I had to stop them, whereas I could tolerate the MMF fine, but it was not able to control the Lupus for some reason. I think one of the problems with me is that the Lupus is specifically targeting my Neutrophils, (white cells) so this is causing a few problems for the medics! I am waiting to try Rituximab through IV now.

Best wishes to all, Karen

[purplemonster7]

I take the liquid version of MMF and I have 7.5mg every day (the same as three tablets) It's a great drug and i've been on it for over 4 years together with hydroxychloroquin and prednisolone and warfarin. This was the third SLE drug I tried and was the best for me. My bloods are good now and I haven't had a major flare for a long time. Just my INR goes up and down a bit but that depends on what bugs i catch along the way!

[lupylupus]

Hi Paul!

I have posted my comments on another link. However, I thought I would add that it has made a world of difference to me. I take 1250 mgs daily along with my other meds and it has been like a miracle. I still have my hair loss, but I feel 100% better.

Best wishes

Margaret

[amita_valmiki]

Hi Paul, I have been suffering from Wegeners from last six years, just two weeks back I am put on MMF. Till this time, things are fine. This month I had 8th relapse of my disease and this is 7th time that I am given Ristova (twice with Immunoglobolin). Hope the drug MMF works, and I have no more relapses. It is all very very expansive for me. But some how I and my family manage to buy these drugs. With kind regards.

[Purpletop]

I've been on CellCept for 5 months, initially at 500mg per day, after a month I was upped to 1g per day. Bloods have been ok but lately my GGT and ALT have started to rise. I've also been losing a lot of weight with it. It worked beautifully otherwise but after a course of antibiotics for something else I'm now back in a flare. I also take Plaquenil. I wish I could stay on it because it improved my symptoms dramatically after about 6 weeks after commencing it. But the continuous weight loss is an issue, so my rheumatologist and I will give it another month or so to see if it stabilises and if not, look at alternatives. I don't know what else I could tolerate, my liver seems to be sensitive and gets inflamed very easily.

[Adamventure]

I took mmf for 100 days 2 grams daily with no perceivable benefit.

[abby1649]

I have been on MMF and Plaquinelle for a year now. Mild side effects but manageable. I feel the benefit as so worth it. Nice to hear long term use seems okay.

[knitsandie]

Hi Paul

I've just sent a reply to rolybear and now noticed your posting. I have been taking mmf since November 2014 firstly on 500mg twice a day, then 1000mg twice a day, which is the dose I still take.

Apart from some bowel probs at first which soon settled down, no further problems. This medication has made a big difference to me and along with hydroxychloroquine, nifedipine, predisolone and the knock on supplements, I feel better than I have for well over a year.

Anyone taking this med must be patient, there are no quick fixes to lupus symptoms.

Knitsandie.

[Shayshay73]

Hello, my name is Shalay. I am 42 white female and in November of 2007 I was diagnosed with LUPU((((SLE))) reynauds syndrome, rheumatoid arthritis and a very bad back. With having all these things I realize there are people worse and for the pain that I am in is unbearable. Due to the fact of having Lupus yes it is messing with my kidneys which is causing water build up on my legs. I have been taking Mecophenolate for two weeks now and the side effects, poops, feeling sick to stomach, trouble with vision, some stomach cramping. Though the medicine is working because I feel somewhat better I can't complain. As much as I know I will get better the only person to help me thru is ((((GOD)))my boyfriend on the other hand is very supportive with me and helps me slot but I am never one to ask for help. Sometimes I feel down because of all the pain but I know deep down I WILL GET BETTER.